Oldest living boy with rare disease ready to graduate from CHS

Oldest living boy with rare disease ready to graduate from CHS

CUMBERLAND - The oldest living boy with Menkes disease will earn his high school diploma on June 17, when he walks across the stage as part of the Cumberland High School Class of 2013 graduation ceremony.

Seventeen-year-old Blaine Grenon will celebrate a milestone virtually unheard of for those diagnosed with the fatal neurological disease that affects copper levels in the body. Life expectancy for the disease, which predominantly affects infant boys, is usually less than 10 years.

Blaine knows graduation will be a special day.

"It's pretty cool," he said. "I'm excited."

Of course, so is his mother, Marianne Grimes, a 3rd-grade teacher at Mercymount Country Day School who had Blaine tested for the disease before he was born. She had previously lost a son and a brother to Menkes disease, and knew she was a carrier.

Treatment with an experimental copper drug started three days after Blaine was born and continued for the next three years. He has also had two double knee surgeries. He gets tired standing or walking for long periods of time, so he uses a wheelchair to get around school.

Other children are benefitting from Blaine, Grimes said, as he is forging a sort of path through various treatments. While everyone reacts differently, Grimes said Blaine's success is encouraging and inspiring to other families, several of whom have met up with him.

"I like meeting the younger kids so I can help out," Blaine said.

Blaine also helps by organizing a fundraiser every year to raise money for Menkes disease research.

The 4th annual event will be held this year on Oct. 19 at 6 p.m. at the Cumberland Public Safety Union Hall, 7 Cray St. The benefit includes dinner, raffles and a show by the band Str8 On. Tickets cost $20.

Visit www.menkeskids.webs.com for more information.

The money raised goes directly to research conducted by Stephen Kaler, a doctor at the National Institutes of Health in Bethesda, Md.

Throughout Blaine's life, Kaler has become like family, Grimes said, adding that he has a picture of Blaine next to one of his own family on his desk at work.

"Blaine is his pride and joy," Grimes said.

Kaler will travel from Maryland to Providence for the graduation, and to join Blaine and his family for a dinner out after the ceremony. Blaine's father, Roland Grenon, 11-year-old sister, Kalen Grimes, uncles and aunts will be among those in attendance.

Thanks to his medical treatment, Blaine leads an otherwise normal life for a high school senior. He hangs out with friends, swims and plays the drums. Two weeks ago, he went to prom with classmate Claudia Berberian, who was later crowned prom queen.

And he's looking ahead to college. Blaine plans to take classes at Community College of Rhode Island and New England Institute of Technology. He is interested in studying psychology.

"It's a miracle," Grimes said. "I can't even put into words how happy I am, how proud I am."